The value of patient-reported experience in oncoplastic breast conservation following standardized assessment and shared-decision making. A qualitative study

Abstract

IntroductionPatient-reported outcomes (PROs) are emerging as a quality marker for breast cancer care provision. Patient-reported experience (PRE) is equally important, but challenges in qualitative research and documentation have resulted in limited data on oncoplastic breast-conserving surgery (OPBCS). This qualitative study aimed to explore the experiences of patients who underwent OPBCS. Patients and methodsWomen who underwent OPBCS between 2015 and 2021 at the Breast Unit of Uppsala University Hospital were followed up longitudinally using PROs. All participants were invited to share their experiences beyond PROs through a “diary.” Patients’ experiences with care, pre- and postoperatively, and other insights and thoughts that they considered important were documented and analyzed. A narrative research methodology, along with thematic analysis, was employed. ResultsOf the 122 women, 60 (49.2 %) desired to further elaborate on their experiences beyond PROs-related aspects. The most common themes included postoperative side effects, challenges responding to questionnaires, adverse effects of adjuvant treatment, external factors contributing to the preoperative and postoperative overall health status, and satisfaction with the surgery and medical staff. Specifically, 26.7 % of the respondents stated that they felt that PROs were not adequately specific and had further reflections. ConclusionsPatients did not report different experiences depending on the operative technique. Their experience focused on the perception of wholeness and potential ambiguities in the PRO questionnaires. Documenting PRE is crucial, as it enables individualized assessment following breast cancer treatment, thereby strengthening patient-centered care.